Tuesday, July 11, 2006

(Updated) OF CATS AND CONGRESS: AN OPEN LETTER ON THE COMBATING AUTISM ACT

It has been often said that getting different groups of people within the greater autism community to agree on anything is like herding cats. Some of the best cat herding to date occurred in the last couple of months in 2005, when several advocacy groups, including some with vastly different agendas, got together to see if they could come together to help Congress revise the pending Combating Autism Act. Those groups helped turn what had been a mere opportunity for Congressional showboating into a piece of proposed legislation that could actually accomplish something. The language that the groups all agreed to support was far from perfect, but it was a dramatic step in the right direction.

Although it was not the focus of the Act, a small section of the bill encouraged ⎯ but did not necessarily mandate ⎯ research into the possible role of environmental insults, including vaccines and their components, in triggering ASD. The inclusion of that language reflected a view that the debate must be settled once and for all, in a manner that could be deemed trustworthy.

Herding cats is one thing. Herding senators is something else altogether. Most Washington insiders predicted that the bill would never pass if it included the vaccine language, but still hopes ran high.

The latest word from the Capitol is that the final draft will not include the vaccine language. It seems that some senators are more concerned with avoiding questions than with looking for answers. The following is the text of a letter my wife and I faxed to our senators, Mary Landrieu and David Vitter.

Dear Senators Landrieu and Vitter:

As constituents and as the parents of a child on the autism spectrum, we are grateful that you have both co-sponsored the Combating Autism Act (“CAA”). As you are probably aware, it is estimated that one out of every 166 children born will eventually be diagnosed with an autistic spectrum disorder, and in many cases those diagnoses may be preventable.

To say that the possible role of various environmental factors ⎯ particularly vaccines (both thimerosal-containing and live-virus) ⎯ is a controversial subject would be a gross understatement. The participation of the Centers for Disease Control (“CDC”) and National Institutes of Health (“NIH”) (through the Institute of Medicine) in the debate have served only to foster feelings of suspicion and distrust toward the government-supported institutions that should lead the way to the truth of the matter. The purpose of this letter is not to convince you that those causal connections have been proven, but rather to highlight the ongoing nature of the controversy, and how actions being taken in the Senate may hinder the resolution of the controversy.

The original introduction of the CAA was a noble idea that left much to be desired. Several autism advocacy groups identified deficiencies in the original bill, and worked with members of Congress to fashion a compromise bill that can move the nation toward answers and solutions.

The bill provided for doubling NIH spending on autism research, empowering the Director of the NIH to act as an “autism czar,” creating a screening program in all 50 states for the early identification of children with autism, funding the efforts of the Autism Treatment Network to identify the best medical practices in the treatment of autistic kids, continuing funding of the epidemiological and public education programs on autism at the CDC, establishing “centers of excellence,” and authorizing nearly $1,000,000,000 of federal spending on autism over the next five years on programs ranging from public awareness and early diagnosis to basic biomedical research.

The compromise bill includes two important provisions that would go far in restoring confidence in Congress and the scientific institutions it funds. A monitoring process will provide much needed transparency to the manner in which the Director of the NIH fulfills the duties placed upon that office. The second important provision indicates that the research conducted by the centers of excellence “should include … research on a broad array of environmental factors that have a possible role in autism, including but not limited to vaccines, other biological and pharmaceutical products, and their components (including preservatives).”

The compromise bill is significant in that 21 separate organizations, many of which do not concern themselves with the issues of a possible causal connection between vaccine components and autism, were able to agree on the best way to move this country past the stage of debating about autism, and instead concentrate on dealing with this serious problem. No one organization can act as the “voice” of the autism community, nor can it be said that the 21 organizations who support the compromise bill speak for all families of autism. But the agreement was as close to a consensus as can be reasonably expected.

Unfortunately, it appears that some Senators do not fully appreciate this historic opportunity to help their nation move past the debate. The Health, Education, Labor, and Pensions (“HELP”) Committee is scheduled to release its official draft of the CAA on July 12, 2006, with final revisions to be considered at a committee session on July 19, 2006. Reports from the Capitol indicate that the committee will drop the language directing research into the role of environmental factors, including vaccines and their components, from the final draft.

If that is the proposed language is removed from the bill, the United States Senate will have sent a terrible message to the American people. That message will be that political expediency trumps the need to discover the truth.

In the past ten months, you have both been forceful advocates for the rebuilding of our state. We now ask that you become advocates for our son, and for the countless families who want answers for as to why their children are autistic, and what can be done. We ask that you use whatever influence you may have to convince the HELP Committee leave the compromise language in place. Failing that, we ask that you take action on the floor of the United States Senate to restore the compromise language.

Thank you for your consideration.

I’ll let you know what kind of a response we get.

UPDATE:

As might be expected, we have heard nothing from our senators. In general, the news from Washington has been sparse and not very encouraging. On the morning of July 12th, Senator Christopher Dodd of Connecticut stated on Imus in the Morning that he was not aware that the vaccine language was being taken out of the CAA, and that he would “fight tooth and nail” to keep it in. Apparently, if he fought, it was not enough. Although it is near impossible to get any definitive word on what exact changes were made to the language of the bill, the word has been that the vaccine language is out.

Of course, there is one man who can probably manage to restore the directive to research the possible connection: Senator Rick Santorum of Pennsylvania. He was one of the original sponsors of the CAA, and has been posturing as a friend to the various advocacy groups since then.

It would be an understatement to say that Senator Santorum’s stated interest in exploring the controversy has been met with some degree of skepticism. This would be the perfect opportunity for him to prove his detractors wrong. To that end, it is probably a good time to remind one and all what Senator Santorum had to say back on June 16, 2006:

. . . We need to invest more science in determining the potential causes or triggers of autism, and see where that science leads us. That means taking a more intensive look at things like environmental causes, neuroscience, specific treatments, and the role of genetics.

We can’t look at some environmental factors and possible causes, while ignoring others. How about it, Senator? Why don’t we “see where that science leads us?”

There's been a lot of activity during the last couple of days. Organizations have withdrawn support, and others have renewed their endorsement.

What I can tell you is that the consensus proposal put forth by the 21 organizations was ignored and the initial draft was nothing short of horrendous. Revisions have been made,and some of the worst parts may have been modified. I am trying to get a copy of the revised draft to take a look at it, and I hope to post something about it by the end of the weekend.

It should come as no surprise that our senators have not responded to our letter.

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